Psycho-social challenges faced by caretakers of children and adolescents aged 0–19 years with sickle cell disease admitted in a tertiary hospital in Eastern Uganda

Atoku, Atim Christine; Nekaka, Rebecca; Kagoya, Enid Kawala; Ssenyonga, Lydia; Iramiot, Jacob Stanley; Tegu, Crispus

doi:10.1016/j.pedn.2022.11.026

Cited by 2 publications

(2 citation statements)

References 21 publications

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“…This approach enables mothers to keep their independence while asserting control over the welfare of their children. 15 In tribal context, the women play a significant role in the management of their natural, social, and economic resources. However, they continue to be behind because of traditional values.…”

Section: Familymentioning

confidence: 99%

Strengthening the Societal Pillars for effective management of sickle cell disease

Kumar

Patel

Rao

et al. 2023

Preprint

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Sickle cell disease (SCD) is a common inherited blood disorder of public health concern in India. Individuals with SCD may encounter stigma, discrimination, and misconceptions about their condition, leading to feelings of isolation and frustration. It is important to note that the psychological impact of SCD can vary among individuals. Some may develop resilience and coping strategies to manage the challenges, while others may require additional support from healthcare professionals, psychologists, or support groups to address their psychological needs. The multidisciplinary approach involving medical care, psychological support, and social interventions is crucial in improving the overall well-being of individuals living with sickle cell disease. While the clinical aspects of SCD are significant, it’s also important to consider the psychological aspects that can affect individuals with the condition. In this context, there is a pressing need for societal support pillars which empower SCD patients and improves their quality of life. In this context, there is a pressing need for societal support pillars which empower SCD patients and improves their quality of life. The impact of societal support pillars on SCD patients is substantial. Strengthening healthcare systems, fostering robust social support networks, facilitating inclusive educational environments, and raising public awareness are integral components of comprehensive care for individuals living with SCD. All these pillars can significantly improve the quality of life and outcomes for SCD patients, ultimately leading to a more inclusive and supportive society.

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Section: Familymentioning

confidence: 99%

Strengthening the Societal Pillars for effective management of sickle cell disease

Kumar

Patel

Rao

et al. 2023

Preprint

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“…One study looked at the various coping techniques used by caregivers of children and adolescents with SCD 0 to 19 years old and the psycho-social issues they face in Eastern Uganda, this research revealed that the psycho-social difficulties faced by caregivers of children and teenagers with SCD in Uganda were complex and included emotional, social, and economic difficulties. In addition, that the caregivers employed a variety of coping strategies to overcome these difficulties, acceptance, others still lived in denial, while the rest used talking with others and getting counseled to reduce the intensity of the feelings experienced (5).…”

Section: Introductionmentioning

confidence: 99%

Hidden stories of caregivers with children living with sickle cell disease in Uganda: experiences, coping strategies and outcomes

Alinda,

Kabiri

2024

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BackgroundSickle Cell Disease (SCD) poses a substantial public health challenge in Uganda, exhibiting distinct regional variations in prevalence. The Uganda Sickle Cell Surveillance Study has estimated an overall SCD prevalence of 13.3%. Notably, this prevalence diverges significantly across the country’s regions, reaching its highest in the northern region at 22.2% and it’s lowest in the central region at 5.3%. This variation reflects the diverse impact of SCD and underscores the need for a comprehensive understanding of its regional implications.SCD places substantial physical, social, and psychological burdens on caregivers, potentially leading to heightened parental stress. However, limited research has focused on the daily challenges and experiences of SCD caregivers, despite evidence showing the detrimental impact on their emotional well-being, personal lives, employability, and socioeconomic status. This study explored the undisclosed struggles of Ugandan caregivers tending to children with SCD, uncovering their coping strategies and subsequent outcomes.MethodsFrom June 23rd to July 30th, 2023, we engaged in the recruitment of participants for our study, we conducted in-depth interviews with caregivers at Mulago sickle cell clinic after obtaining their informed consent. An interview guide was used as the primary data collection tool, with interviews lasting 30-45 minutes. Twelve participants were recruited, ensuring comprehensive data collection by following the data saturation principle. We analyzed the collected data using open coding.ResultsThree key themes emerged: caregiver experiences, coping strategies, and outcomes. Initially, caregivers grappled with confusion and uncertainty before a formal diagnosis. Financial strain and inadequate support posed persistent challenges, affecting their emotional well-being. Coping strategies varied, encompassing traditional remedies and modern medical treatments for symptom relief. Coping outcomes were complex, reflecting caregivers’ resilience alongside substantial emotional distress and sleep disturbances. The substantial financial burden further exacerbated their overall well-being.ConclusionElevating awareness and knowledge about sickle cell disease within communities is essential. Such awareness can empower caregivers of children living with sickle cell disease, promoting emotional resilience and mitigating family disruptions.

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Psycho-social challenges faced by caretakers of children and adolescents aged 0–19 years with sickle cell disease admitted in a tertiary hospital in Eastern Uganda

Cited by 2 publications

References 21 publications

Strengthening the Societal Pillars for effective management of sickle cell disease

Strengthening the Societal Pillars for effective management of sickle cell disease

Hidden stories of caregivers with children living with sickle cell disease in Uganda: experiences, coping strategies and outcomes

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